Caregiver-Reported Real-world Use of Cannabidiol (CBD) and Effects on Seizures and Caregiver Burden: Results From the CARE-EpiC Survey
Sheila Thomas1, James McAuley2, Christopher Jones3, Elisabeth Kipping4, Michael Faithe1, Kristen Rosen4
1Jazz Pharmaceuticals, Inc., 2The Ohio State University, 3University of Maryland, 4Evidation Health, Inc.
Objective:
The Caregiver Analysis of Real-world Epidiolex® in Epilepsy Context (CARE-EpiC) study was conducted to understand real-world implications of CBD treatment from the caregiver’s perspective.
Background:
Epidiolex®, a plant-derived highly purified pharmaceutical formulation of CBD, is approved for treatment of seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome (DS), and tuberous sclerosis complex (TSC); non-seizure benefits of CBD have also been reported.
Design/Methods:
Caregivers (aged ≥18 years) of dependents taking CBD (Epidiolex®; 100 mg/mL oral solution for treatment of seizures) completed a cross-sectional survey. Caregiver burden was measured using the Burden Scale for Family Caregivers (BSFC; maximum score, 30; higher scores=greater burden). Outcomes were evaluated overall and for subgroups: race/ethnic communities (underrepresented/non-underrepresented), sex (female/male), and caregiver responsibility (shared/sole).
Results:
Overall, 204 caregivers completed the survey. Mean (SD) age of caregivers was 38 years (11); 38% were from underrepresented communities, 54% were female, and 78% shared caregiver responsibilities. Most dependents were adults (56%), had co-occurring conditions, and were taking concomitant medications for seizures (86%). LGS, DS, or TSC was diagnosed in 52% of dependents; 45% were experiencing <1 seizure/week. Mean (SD) overall BSFC score was 14.1 (6.8); higher scores for caregivers from underrepresented and male subgroups. Overall, caregivers reported emotional and behavioral care activities as most burdensome (81%), and daily care activities had greater negative impact on underrepresented caregivers (83%). Seizure frequency reduction was the most common reason for starting CBD (46%). Most caregivers reported reduction in average seizure duration (64%) and improvements in dependent’s condition (78%) and their own experience (78%) after CBD initiation.
Conclusions:
CBD initiation was associated with positive changes not only in dependents’ well-being but also in caregiver experiences. Results showed that in caring for their dependents’ physical, emotional, and behavioral needs, caregivers may require additional support that might not be captured in traditional burden of illness and cost-effectiveness analyses.
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